Monthly Archives: October 2014

Unlike the short story that the title alludes to, this post is about happy things.

August 2012

When I started blogging, it was scary to be writing about myself. I had no idea what me talking about me sounded like. At first I think I simply imitated the voices of other bloggers I liked, holding myself at arm’s length as a defense mechanism.

I probably shouldn’t have been as worried as I was. Few people read those early posts in real time. A lot of you have since mainlined the entire blog (in chronological order, no less), but at the time, I was mostly shouting in the wilderness.

There have been times when I’ve been tempted to go back and revise some of the early posts. I had little knowledge about autism and no right sounding as authoritative as I did. But I’ve let them stand as they are because I like the record they create and I like the evolution I can trace in my writing and in the way I’ve come to think about autism and being autistic. I’ve learned a lot in 26 months, some through research and self-examination, but just as much through the comments that so many of you have generously shared.

As the number of comments on each post has grown, I’ve come to see my writing as a conversation starter and I look forward to seeing what readers will add to my initial thoughts.

These past few weeks I’ve had a sensory comfort zone the size of a postage stamp. There are a few things playing into my increase in sensory sensitivities* and one of them is definitely the change of seasons. Transitioning from summer to winter or vice versa is surprisingly demanding.

I think the biggest factor is the constant sensory adaptation. During the winter and summer, the days are pretty consistent from one to the next. It might be uncomfortably hot or cold, but at least my body knows what to expect each day and dressing appropriately doesn’t require a lot of forethought.

Spring and fall, on the other hand, are filled with unpredictable days. Yesterday was t-shirt weather. Today I have on sweats and a thermal shirt. Three days ago I left all of the windows open overnight because it was uncomfortably warm in the house. This morning I dashed out of bed to close the kitchen window, which was open two inches and letting a cold draft in.

With each temperature fluctuation, I find my body struggling to adapt. Too hot. Too cold. Over dressed. Underdressed. It’s hard to find that sweet spot–a consistent, comfortable environmental and body temperature. For the average person, this probably isn’t a big deal. I imagine things like dressing in layers and putting on or taking off clothing as needed is a good solution.

The problem with that strategy is that thanks to wonky interoception I often don’t notice when I’m too hot or too cold until it reaches a level of mild to moderate physical distress. At that point, doing something about it requires not just taking off or putting on a layer, but lowering or raising my body temperature to a comfortable level again. Simply putting on a sweater isn’t a complete solution to whole-body shivering. Continue reading Changing Seasons and Sensory Sensitivities→

If you aren’t familiar with “spoons” in the context of disability, take a few moments to read Christine Miserandino’s landmark piece on Spoon Theory before reading this post.

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Spoons, by nature, are a limited resource. They’re replenishable, but not on demand. Sometimes we get a new supply each day and sometimes we have to ration out spoons over many days before our supply is restocked. And there’s no spoon store, so forget going out to buy some if you unexpectedly run out.

Conserving spoons is an essential skill. The most obvious way to conserve is simply to ration. More things to do today than you have spoons for? Eliminate some stuff!

That works fine when your day has lots of padding. It’s relatively easy to cut out things like “go out for lunch with officemates” or “participate in 500-comment Facebook conversation.” You probably won’t miss them much. But what happens when you’ve got your daily schedule down to only the most essential items–literally just the things you need to do to make it through your day without getting fired, flunking out of school, or starting to grow exciting new cultures in the kitchen sink?

Not only do you have to start choosing among cutting out essential activities, but life can start to look pretty grim. Extreme rationing is not a viable long-term strategy. Continue reading Conserving Spoons→

The Scientist and I went out to dinner last Friday night. It was the day after I’d taped my radio interview and I was feeling wiped out, so we decided to treat ourselves.

During the course of dinner, the waitress made many visits to our table, asking the questions that waitresses do.

How are you tonight?

Would you like me to bring any ketchup or hot sauce?

Is there anything else I can get you?

Would you like more water?

Do you want to see the dessert menu?

To every one of those questions (and perhaps others I don’t remember) I replied, “I’m good.”

“I’m good” made sense the first time and is an okay answer for the others, assuming I didn’t actually want more water or a dessert or need anything else. Except that I did want more water. I was just too tired to override the default script my brain had settled on and by the time I realized what had happened, she had disappeared into the kitchen.

We’ve arrived at the final set of survey questions for this round. Phew. These are the questions that didn’t seem to fit thematically in any of the other surveys. I wish I had a snappy title for it, but I ended up going with the obvious. Okay, maybe not that obvious.

Do you think you would have performed better academically if you hadn’t devoted part of your brain power to performing “normally”?

What [stereo]typical ASD trait you lack would you want to have? Eg maths genius 😉

Do you have a job or volunteer activity that you are particularly suited to because of your autism?

Do you group letters on things like signs and license plates until you can get an even number?

What can’t you still believe everyone doesn’t think?

If you are interested in something typical for your gender (e.g. fashion for girls) are you interested in a different way? (e.g. hats not shoes or historical costume rather than being “bang on trend”)

Do you think some of the appeal of a favourite subject/special interest is that immersion in a topic acts as priming making it easier and more comfortable to remember and think about it? Do you have trouble remembering facts on demand for other subjects you aren’t spending time on even though you know it and find it interesting?

Do you have difficulty concentrating when listening to radio/audio drama?

What was the most helpful thing after you received your diagnosis? Why?

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

I suspect this may be too esoteric or scattered or specific, but I’m putting it here in the hopes that it will strike a chord with some readers. My writing style is shifting as I find it harder to hold the thread of long passages of text and I’ve decided to give in to that and see where it takes me. If you’re in the mood to read something more conventional, JKP has posted an excerpt from my book in which I explain why it’s called Nerdy, Shy and Socially Inappropriate.

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I’m in an in-between place, much like the one I found myself in after learning more about Asperger’s and before getting diagnosed. If you’ve been there, you’re probably familiar with the swirl of feelings in-between places evoke–certainty and hope shot through with doubt, fear, and confusion. Determination, undercut or perhaps fueled by intermittent anger and frustration.

The in-between places are hard. We no longer quite feel like the person we were; we’re not yet the person who will emerge on the other side of this no man’s land.

*

Liminal (adjective):

of or relating to a transitional or initial stage of a process.

occupying a position at, or on both sides of, a boundary or threshold.

*

The spaces between, the grey areas, have always fascinated me. When I wrote fiction, I was endlessly picking at the in-between places. Perhaps because I find them so hard to stomach in real life.

I’m not good with uncertainty. Literally, my number one reason for seeking out an autism diagnosis was peace of mind. I needed to know if I was making it all up in my head / imagining myself into a neurology / selling myself a bill of goods because I’d grown weary of looking for answers.

To put my mind at ease, someone who ‘knew about these things’ would have to validate my suspicions in a way that I couldn’t do for myself. That piece of paper, I figured, would get me over the hump and out of the in-between place of “this feels right but what if . . . ?”

It did, though not quite in the way I expected. It was more anti-climax than epiphany. But it was a path to closure and closure was what I needed to get on with life.

*

I understand that having access to a paper diagnosis is a privilege. At least, I thought I did. Maybe I’d overestimated the depth of my understanding.

Once again I find myself stuck in an in-between place, this time with no immediate possibility of a diagnosis. Months of making the rounds of doctors and tests have told me only what is not the cause of my language difficulties.

I’m left with three possibilities:

this is temporary and will resolve itself when it’s good and ready

this is something serious and the evidence that would allow a diagnosis is years away

this is my new normal and I should learn to live with it

Which is a bit like being told, “there’s probably nothing serious causing that limp but if there is, we’ll know for sure when your leg falls off.”

*

If I’m being honest, I need to admit that number 3 on that list is true regardless of whether I’ve won the prize behind door number 1 or door number 2. Months going on years is too long a period to simply keep hoping tomorrow will magically be different.

It dawned on my last weekend that one way out of the in-between place is acknowledging that where I am now is my new normal. That is a hard conclusion to arrive at when the new normal appears so much shabbier and rundown than the old normal.

But there is no practical reward for living in an imaginary future. It only fuels that awful feeling of suspended reality and in-between-ness.

*

Things I am learning to hold close and be with:

uncertainty

anger

sadness

imperfection

fear

*

In the in-between place, it helps to keep reminding myself that it’s okay.

It’s okay to feel certain and uncertain, often at the same time. Feeling one doesn’t make the other untrue.

It’s okay to doubt myself, to feel insecure and crazy at times. Like the anger, fear, sadness and frustration, I can feel those things, move on when I’m ready, come back to them when I have to.

It’s okay to not have an answer. There are more unknowns in the universe than there are knowns. See also: the unknown unknown.

It’s okay to change. 2500 years ago Heraclitus said, “You could not step twice into the same river” and there’s a reason people still quote him. We are constantly changing, like it or not, accept it or not, realize it or not.

It’s okay to ask for validation and it’s also okay if not everyone I share my experience with offers validation. Ultimately, I have to punch my own ticket.

It’s okay to feel like I’m the only one who knows my experience and, at the same time, it’s okay to identify with the experiences of others, even if I don’t share their diagnosis yet or never will. Adapt what is useful applies to more than just kung fu.

I’ve spent the last six months looking for the threshold of this in-between space. Surprisingly, I found it in the confirmation that there would be no answer, not now.

Maybe that’s a kind of resignation. Not a giving up, but a giving in, a practical acknowledgement of reality. I’m done struggling with this thing for now. There is a kind of tired relief–a quiet sense of peace–in acceptance and I’m ready to embrace that.

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.